OP0304-PARE “THE CORONA PANDEMIC – AND HOW WE REACTED TO PATIENTS’ NEEDS”
Authors: C. Elling-Audersch
Journal: Annals of the Rheumatic Diseases (2022)

Background The pandemic had major negative effects and is a big challenge to all patient organisations in Europe. Our organisation (Deutsche Rheuma-Liga) with about 270.000 members is already equipped with various tools and skills for the support of our members. We are offering not only information, but exercise-programs, self-management courses, different events to meet and exchange. But after two years of the pandemic, the problems have piled up. Our members are missing the face-to-face contact. It was impossible, due to the limitation and restriction of contact, to conduct events, meetings, consultations, and exercise programs. Most of our offers came to a standstill. Objectives Due to these problems, it was not only difficult to live with a chronic rheumatic disease, but there was also no possibility to get access to helpful information and advice or to use the various services, either. Especially the fear of Covid-19, which impact it has on RMDs, questions regarding the vaccination and the medication were increasing to a substantial extent. Methods Three different measures were taken: Information needs: By improving our website, it was possible to provide digital content to our members. We offer essential and understandable information with additional links to the most current expert information on COVID-19, like the EULAR recommendations and those of our national rheumatologist society (DGRh). Activity needs: Different digital exercise-programs were developed by our nineteen national member organisations. We shared this services on the website of our umbrella organisation with all members, nationwide. Our campaign “Keep on moving” shall encourage our members nationwide practising their exercise and developing innovative ideas into the daily routine. Results Interaction needs: Regarding our “Rheuma-Forum” (a digital exchange format for people with arthritis) I want to explain in detail with dates and facts how our organisation enhances the contact to our members and other people with arthritis who were looking to our organisation for information. We replied to questions and addressed the needs on an individual basis. Since the beginning of the pandemic, we implemented four Expert-Forums per year, addressing many comparable questions regarding the issues of COVID-19 (like RMDs and the covid vaccination, possible side effects). Our experts are well-known, specialized rheumatologists and trained RMD patients. The figures speak for themselves. 2020 – 4 Expert Forums with 857 Q&amp;A within 65.396 accesses 2021 - 4 Expert Forums with 677 Q&amp;A within 28.180 accesses 2022 – 1 Expert Forum within 242 Q&amp;A within 10750 accesses Conclusion We can be pleased that our strategy to provide information to our members and other people with arthritis via the digital way was successful. We already know that this will be an ongoing process. But we are on the right path to encourage our members in difficult pandemic times and give them important and valid information. Our example of the expert forum shall encourage patient organisations to try out new digital and interactive solutions not only in pandemic times. Disclosure of Interests None declared